suggestion... how about introducing ourselves??

[jamiesav]

Hello. I have just come across the forum recently and noticed this thread.

I'm 32 and was diagnosed with CKD in Jan 2011. Kidney function was 22% ish at the time but no real diagnosis of what caused my disease. Function has steadily been dropping and is now down to 12%. I'm in the very lucky position that my father is donating one of his kidneys and we are pretty much now just waiting on being given a date for the operation.

Very nervous about things but also at the same time very grateful, there are a lot of things out there that are far worse!

I also have a great wife and a 14 month old son, who is currently taking up all my available energy (Wouldn't change that for anything though)

Its nice to hear stories from people who are going through the same thing.

[bigbuzzard]

Hi jamiesav

Just a very quick welcome. Great news about the impending transplant. I had one in 2007 which made me feel nearly 20 years younger overnight (I was 39 at the time). Since then I've had a young daughter, had some ups and downs with the transplant which declined unusually early, so had a second one from my cousin in 2012. The whole thing has really been a great adventure! I almost never had time to feel nervous. I've felt in great hands with the teams of renal docs and nurses in two UK hospitals. Really good luck with it all - and any questions, feel free to ask on here, or by PM anytime.

[djderby555]

Hi,

Back in November 2013 I went to the doctors as I wasn’t feeling well. I had some blood tests and it was’nt good news. Well to cut a long story short I was approaching renal failure. To put it simply, if you take a healthy person’s kidneys as 100% efficient then mine were < 20% efficient. The doctor said that maybe in …about 3 years I may require kidney dialysis or a kidney transplant. The doctor said it may be sooner or later he doesn’t know.

So over the past couple of months I have had a series of blood tests, urine tests and scans. On the 21st March I had an appointment with kidney specialist. And basically the tests confirm that my kidneys are bad and that I am in stage 5 kidney failure. I will be needing a kidney transplant or dialysis soon. My GFR is around 15%...... My brother and wife have kindly volunteered to be donors.

At the moment it seams every week I have hospital appointment of some description. For example this week I have had another blood test and had an ECG. On Tuesday I will be having a "transplant assessment", whatever that means. My calendar is filled with hospital appointments of some description. And even after all these tests, and the tests a donor will have to do there is no guarantee we are a match or that a new kidney will work. To be honest I am really fed up with all these tests. I have had enough!

Further more, I will not be undertaking dialysis. I have thought about this long and hard and discussed this at length with my wife and when the time happens I want nature to take its course. Why? I here you say, well my quality of life is very important to me and the quality of life of my family is also important. Firstly when your kidneys fail your bladder stops working and so you cant urinate and cant drink much as water retention becomes a major problem. And when you undertake dialysis your quality of life is drastically reduced. We have discussed the treatment options with the Dialysis and Transplant Doctor and there are 2 types of dialysis which are available. In peritoneal dialysis a plastic tube is permanently placed in your abdomen and this tube is connected to a machine about 4 times a day 7 days a week (either at home or hospital). In Haemodialysis you have to attach yourself to a machine via a tube connected to your arm (either at home or hospital) for 3 or 4 times a week. Both take about 3 hours to complete in a session. Both have bad side effects. For both there are risks of infection. For both you have to restrict what/amount you eat and drink. And so both limit the quality of your life and cause disruption to the family and I don't want to go through that or put my family through that either. And I don't want to turn the home into a hospital either, its not fair on my family....

And at the moment I'm even in 2 minds whether I want to put myself and family through transplantation!! There are no guarantees and even if it does work my quality of life will still be reduced due to all the side effects of all drugs I will have to take... I don't know whether I want to face that or not....

Does any1 else feel this way or am I being selfish.

I don't want to die which is why I am trying to do things to prevent/slow down the inevitable. The doctors say I cant reverse the situation, but hey they maybe wrong. So I have completely changed my diet now. I have more or less eliminated processed food and salt. I have cut down on red meat considerably. I eat more fish, raw veg and fruit and so on. And I am doing as much exercise as I possibly physically able to....

Anyway, just thought I would post on here and say Hi

[MandyV]

Hi djderby555 and welcome to the board. I suggest that you post this again in a separate post so that you get more responses but my first thought is that you have a very strange take on kidney disease.

We are all patients here - or supporters of patients - and many of us have a great deal of experience of both dialysis and transplant. Since you say you don't want to die and are doing exercise etc to try and help I assume (perhaps wrongly) that you do not have other significant co-morbidities (diseases/conditions) - however regardless you might want to meet and talk to people who have been through both dialysis and transplant.

Although you say that you have had many discussions your post suggests that you have a somewhat simplistic view of the facts (and one which i would say you don't have completely correct in any case). If you want to know what the treatment is like then why not read many of the posts here first and then ask questions to clarify your understanding. Also there may be a 'buddy' system at your hospital where you can ask to meet people who have been in a similar position or attend a pre-dialysis or pre-transplant seminar which some hospitals run.

[lizbee]

Hello djderby welcome to the forum, I agree with Mandy in many ways, it must feel that you are the only person in the world going through all of this as you kidneys were in very bad shape and it was the first you knew of it. I myself have had my disease for 17 years and have been backwards and forwards to so many hospitals for so many tests, but they all of them had to be done. Its my experience that kidney doctors do not mess about they know what is required and they get it done. So you will have to continue with those tests in order to have that transplant and failing that you will then be able to decide about dialysis or not........I am just about to start dialysis and I am quite excited about it and also find it a bit daunting, there are people who never stop passing urine while on dialysis and they cope pretty well with the restrictions and maybe you will be one of these people.......I too question about going on dialysis but there was no real option as if I did.nt I would die and fairly quickly according to my doctor so I decide it had to be and now its about to begin. Lots of people on here will give you answers and support for how you are feeling and hopefully things will calm down a bit for you.................


Liz

[djderby555]

Thanks Liz and Mandy for your comments.

As you probably gathered today I am all over the place at the moment. I am so scared and confused. I really do hate hospitals as both of my parents died in hospital and the prospect of dialysis and/or transplant really freaks me out. I am doing all these tests but as I said I still don't know whether I want to go through transplantation or dialysis. Its really hard to explain how I feel. I know you (and the doctors) think I am stupid to even contemplate not giving dialysis a go. But that just gives you an indication of my state of mind and how I am not able to make decisions at the moment. Part of me thinks sod it all, get on a plane to Australia and have the time of my life until my kidneys pack in and die over there on the beach watching the waves lap at my feat. I am rambling now and making no sense I know.

I just don't know what to do. I have read that one of the symptoms of kidney failure is confusion and that's probably the reason why I cant think clearly.

[AmandaClare]

I'm sorry you're going through this. I know it's very tough.

Go to Australia with your new kidney and I think you'll have a much better time. I spent five months there, just tucked my drugs in my backpack and went. Life is never quite the same but it can feel far more precious.

I agree with Mandy that meeting a few other patients might be really useful. It must all seem very abstract to you.

Yes, brain fog is a well-known effect of kidney failure. That doesn't invalidate your feelings but may help explain your sense of confusion.

All the best, keep posting
Amanda

[jstuartrobson]

I think we all here know how you feel, and it's understandable. With dialysis your life does change, but it didn't become impossible. When I knew dialysis was imminent for me, I was so scared. My family were hundreds of miles away so it was tough. I've been through dialysis, had ups and downs. At one point before going on to overnight dialysis, I was dialysing 5 times a day and holding down a full-time job

Now I'm nearly 10 years post transplant. Have children

As I said, life does change But doesn't or shouldn't stop you entirely from living a relatively active life.

At the end of the day, it's your decision. I'm sure you will make the right one.

Hmm it's late. Must try to get some sleep, so apologies I've gone off one there

[kidj]

Hi everyone,

It's nice to see that KPG has a very vibrant forum. I am Kidj 27 years old currently living in Singapore. In 2011, I was diagnosed with glomerulonephritis. No kidney biopsy yet but my doctor believes it is caused by IGA Nephropathy. I've only recently found out about GFR so based on the calculators available online I have a GFR of 88, which I think puts me at stage 2. Frankly, knowing where you are in the stage of the disease helped me a lot.

At first, I was in extreme denial of the condition. Depression hit me and I was only able to tell a friend 2 years since I've had it. My parents still do not know that I have it but I think they already have an inkling (as parents always do). I was afraid to make tough life decisions as I don't know when my kidney will stop function properly. I have only started to join these forums lately to help me to accept the condition. I always felt acceptance always means defeat and losing out on a lot of opportunities. So I'm really looking forward to being part of this forum and learning from all of you who've had the same experience.

Thanks! <3

[jbell]

Hi everyone,

It's nice to see that KPG has a very vibrant forum. I am Kidj 27 years old currently living in Singapore. In 2011, I was diagnosed with glomerulonephritis. No kidney biopsy yet but my doctor believes it is caused by IGA Nephropathy. I've only recently found out about GFR so based on the calculators available online I have a GFR of 88, which I think puts me at stage 2. Frankly, knowing where you are in the stage of the disease helped me a lot.

At first, I was in extreme denial of the condition. Depression hit me and I was only able to tell a friend 2 years since I've had it. My parents still do not know that I have it but I think they already have an inkling (as parents always do). I was afraid to make tough life decisions as I don't know when my kidney will stop function properly. I have only started to join these forums lately to help me to accept the condition. I always felt acceptance always means defeat and losing out on a lot of opportunities. So I'm really looking forward to being part of this forum and learning from all of you who've had the same experience.

Thanks! <3

Hi Kidj it is so nice to meet you and also that you have joined the forum. You sound a little bit alone so at least you can talk to us on here and find out things oyu want to know on here. What have they told you about your disease and its progression at your renal clinic ? Do you attend a clinic ? I didnt get sent to a nephoraligist until I reached stage 4. I am surmising at stage 2 you still feel ok, I did but I don.t know if that is the case for everyone. It would be of great suport for you if you could explain to your family about your illness, but obviousley that is entirely your decision. Anyway again it is good to meet you looking forward to your posts....Jan

[kidj]

Hi everyone,

It's nice to see that KPG has a very vibrant forum. I am Kidj 27 years old currently living in Singapore. In 2011, I was diagnosed with glomerulonephritis. No kidney biopsy yet but my doctor believes it is caused by IGA Nephropathy. I've only recently found out about GFR so based on the calculators available online I have a GFR of 88, which I think puts me at stage 2. Frankly, knowing where you are in the stage of the disease helped me a lot.

At first, I was in extreme denial of the condition. Depression hit me and I was only able to tell a friend 2 years since I've had it. My parents still do not know that I have it but I think they already have an inkling (as parents always do). I was afraid to make tough life decisions as I don't know when my kidney will stop function properly. I have only started to join these forums lately to help me to accept the condition. I always felt acceptance always means defeat and losing out on a lot of opportunities. So I'm really looking forward to being part of this forum and learning from all of you who've had the same experience.

Thanks! <3

Hi Kidj it is so nice to meet you and also that you have joined the forum. You sound a little bit alone so at least you can talk to us on here and find out things oyu want to know on here. What have they told you about your disease and its progression at your renal clinic ? Do you attend a clinic ? I didnt get sent to a nephoraligist until I reached stage 4. I am surmising at stage 2 you still feel ok, I did but I don.t know if that is the case for everyone. It would be of great suport for you if you could explain to your family about your illness, but obviousley that is entirely your decision. Anyway again it is good to meet you looking forward to your posts....Jan

Hi Jan,

Thanks for the warm welcome. I did chose to deal with alone at the start. Hopefully I build the courage to talk openly about it (starting with this forum). I was just afraid of the prejudice (as one of the thread discussed) and being blamed for the disease (which what a few friends have done so far). The doctor haven't really talked about it in detail with me (as I am also afraid to ask questions). What happened was I got passed on to different doctors (2 internists and 2 urologists) before they were finally able to point me to a nephrologist who's in a renal clinic. I think there's a difference in the medical/hospital system with ours and the UK so I was able to talk directly to a nephrologist. Basically, what I know is that I have blood in my urine and I need to manage my BP since I am also hypertensive and closely monitor my blood sugar since I am borderline diabetic. So far blood in my urine is about 9-10/hpf which goes up and down in the past 4 years and creatine level, which is also goes up and down a bit. I was told not to worry about it yet since protein hasn't turned up in my urine tests yet. I was actually wondering whether this 'passive' approach to managing the CKD was the way to go. It was one of the reasons why I found it hard to accept the disease. I always ask, why aren't we doing something about it? Anyway, I hope to tell them about this next year when I come back. Or probably soon when I finally accept my condition. Kidj

[lizbee]

Hello Kidj welcome to the forum I too have glomerulonephritis but mine was caused by my own immune system attacking my kidneys, I was diagnosed 17 years ago like you in the very early stages of ckd. My experience of living with it has been very good up until 2 years ago when my kidneys started to fail and | am now stage 5 and have just started dialysis. it took a long time for me to get here to this stage in all that time I have never come across someone with the same disease I am told its quite rare, your symptoms are different to mine that might be the Iga thing but I am also told that there are different levels to this disease, I was relatively well for years attending clinics doing all sorts of tests and had two biopsies over the years, I am now on dialysis and will be fr the rest of my life I hope that like me you have a long period of good health before things get bad for you if you want to ask me anything go ahead and I will see if I can advise you, one thing I would say is tell your parents and start asking questions of your doctors the more you know and the more support you have will help you cope with this..............I am and was the only member of my family to have kidney disease..............good luck

Liz

[jbell]

Hi kidj again, you were saying you feel as though your treatment to you feels passive. The real thing that you can do to slow down the progression (not cure it, thats not actually possible). But if you can keep your bp under control and really keep your blood sugars under control as well, that is a really good way to help. As high bp and blood sugars are very bad for your kidneys and having no protein in your urine is a very good sign. Kidney disease is in no way your fault and maybe your friends need a little education about CKD. You can only do your best to look after yourself, but accepting you have this disease is a major step and learning to deal with it is a difficult road. All the best ....Jan

[morningdew]

Hi, I'm Mornindew, or Joan. I'm Scottish, but have lived in Australia for many years. I am nearly 80. I have two sons and a daughter, two grown-up granddaughters, a chihuahua, and a miniature poodle. I had glomerularnephritis twenty-one years ago, and I have a message for Kidj. Although I always had blood in my urine, and my eGFR deteriorated slowly, it has only now reached 30 after all this time. I worried a lot at first, but then got tired of being worried and got on with my life. I have had twenty-one years of reasonably normal life since then. Now, I'm slowing down, but there are other problems in the picture too, due to aging, especially arthritis. In the time you may well have ahead of you, Kidj, who knows what medical advances may have been made. I wish you well.

[lizbee]

Hello Morningdew what a lovely and inspiring message you have left here for him. thank you for sharing your journey with us and I wish you well..........

Liz